Autism Speaks: I was Wrong.

[SirNitram]

Einstein presented some symptoms(/Autistics Are Yay nutbar)!!1111

Yea, Autistic people are now able to exist because society is better. There is a great debt owed to those who made it so we can not only be helped to the limited degree we are, but made it so diagnosis no longer meant a one-way trip to the asylym for an icepick lobotamy.

The thing that bugs me about all this is what the majority don't know much about it, and make some inherently faulty assumptions(LFA's are completely shut out, without communication; that the Cure movement is like the cure for cancer movement; that autistic adults are actually given any aid or research attention of note), which are nonetheless reflecting generosity towards the condition. It's not that most want to jam a random pill down our throat, or try out the latest 'safe' and 'acceptable' aversion therapy on us. It's that no one thinks anyone is that insane and selfish. And the snake-oil salesmen who reap the profits off the parents are very good at their marketing.

[Norseman]

There were more than Newton. Moreover Medieval society was far more tolerant than many people think. Although low functioning autists would have trouble high functioning ones and those with aspergers would be the local weirdo or eccentric. I also dare say you'd be surprised if you did a diagnosis of the various convents and monasteries that covered the land (I mean come on! An unchanging environment bound by strict rules and constant ritual? Several of the leading lights of monasticism must have had asperger's.

Once more people seem to think that autist = screaming your head off and smearing feces on the walls. Such a child might, unfortunately, be taken as a changeling and killed. I doubt this would cover anyone posting in this thread.

[Illuminatus Primus]

Einstein presented some symptoms(/Autistics Are Yay nutbar)!!1111

Oh yes, more Internet psychologists' eager canonizing of historical figures. This is anything except lacking in rigor.

Fred Volkmar, a psychiatrist and autism expert at the Yale Child Study Center is skeptical; he says, "There is unfortunately a sort of cottage industry of finding that everyone has Asperger's.Cite

[MKSheppard]

but made it so diagnosis no longer meant a one-way trip to the asylym for an icepick lobotamy.

Nevermind the fact that in the olden days, if you were deaf, you were universally assumed to be retarded/stupid/infebrile. Look, I can come up with examples of past maltreatment too!

<snip>

And the snake-oil salesmen who reap the profits off the parents are very good at their marketing.

Sounds a lot like the Deaf Rights/Community's view on the Oral Movement and Cochlear Implants -- that they're just snake oil salesmen trying to make DEAF people into "normals".

[SirNitram]

Einstein presented some symptoms(/Autistics Are Yay nutbar)!!1111

Oh yes, more Internet psychologists' eager canonizing of historical figures. This is anything except lacking in rigor.

Fred Volkmar, a psychiatrist and autism expert at the Yale Child Study Center is skeptical; he says, "There is unfortunately a sort of cottage industry of finding that everyone has Asperger's.Cite

Reading the pampered brats who spout this, they will claim without irony any of the great minds.. No matter how socially outgoing they were! ..As part of it. Then again, is this much different from those who claim, say, MLK Jr. was a conservative?

[SirNitram]

but made it so diagnosis no longer meant a one-way trip to the asylym for an icepick lobotamy.

Nevermind the fact that in the olden days, if you were deaf, you were universally assumed to be retarded/stupid/infebrile. Look, I can come up with examples of past maltreatment too!

Oh my, look at Shep trying to be clever when he reinforces the point: Disabled persons are dependent on modern society.

<snip>

And the snake-oil salesmen who reap the profits off the parents are very good at their marketing.

Sounds a lot like the Deaf Rights/Community's view on the Oral Movement and Cochlear Implants -- that they're just snake oil salesmen trying to make DEAF people into "normals".

Hehe, the strawman's out again. Of course you snipped the rest: You'd have to admit you can't meet the basic challenge of showing the cures I referred to are actually based in any science for their proclamations of working on Autistics, whereas a Cochlear implant is the result of rigorous research and engineering!

Will you never tire of outright lying to turn this into something it's not, little boy, or will you just take any chance for a swipe at me personally? If you just want to attack me have your balls drop and post such.

[Terralthra]

The question I have, SirNitram, is how exactly do you expect research entities and the medical profession in general to arrive at a working cure/treatment for autism without testing it on autistic people? At some point, an untested drug has to be administered to an autistic population to gauge its efficacy, no?

[SirNitram]

The question I have, SirNitram, is how exactly do you expect research entities and the medical profession in general to arrive at a working cure/treatment for autism without testing it on autistic people? At some point, an untested drug has to be administered to an autistic population to gauge its efficacy, no?

You seem to be misunderstanding me. They're not conducting scientific, double-blind research tests. They are saying 'This will work'. I have said before, I eagerly await being proven totally wrong on this. If you have evidence actual, scientific, double-blind research tests are being conducted and resulting in the attempts made by these groups, I will concede.

[Broomstick]

The question I have, SirNitram, is how exactly do you expect research entities and the medical profession in general to arrive at a working cure/treatment for autism without testing it on autistic people? At some point, an untested drug has to be administered to an autistic population to gauge its efficacy, no?

I realize you asked Nitram, but to my mind I have to question the pharmaceutical approach. While I can see a potential use for some medications in some, limited situations I have to question the "magic pill" approach. When my mother had her stroke, which destroyed some of the language center of her brain causing a communication issue, they didn't medicate her, they used other forms of therapy to retrain her brain to circumvent the damaged area. If someone is brain injured we might medicate to prevent seizures, but the concentration is on retraining the brain. If AS disorders are due to faulty brain "wiring" why would we think throwing drugs at the problem will "cure" it when we don't use that approach for most other localized defects? Seems to me the logical approach would be to train/retrain the brain to make use of working areas to compensate for the problem areas.

That's assuming the problem is structural rather than chemical, of course.

[Aaron]

I realize you asked Nitram, but to my mind I have to question the pharmaceutical approach. While I can see a potential use for some medications in some, limited situations I have to question the "magic pill" approach. When my mother had her stroke, which destroyed some of the language center of her brain causing a communication issue, they didn't medicate her, they used other forms of therapy to retrain her brain to circumvent the damaged area. If someone is brain injured we might medicate to prevent seizures, but the concentration is on retraining the brain. If AS disorders are due to faulty brain "wiring" why would we think throwing drugs at the problem will "cure" it when we don't use that approach for most other localized defects? Seems to me the logical approach would be to train/retrain the brain to make use of working areas to compensate for the problem areas.

That's assuming the problem is structural rather than chemical, of course.

I always got the impression that medication is simply cheaper and easier than the team of therapists required to re-train an autism sufferes brain. To use myself (with PTSD and physical disabilities) as an example, it's taken eight years to progress to being able to function reasonably well outside the house and to be able to do things like lift my daughter once a week for a few minutes. The mental therapy alone for eight years at 160$ an hour is around $35K plus the cost of physio and surgeries. That's in Canada so I imagine that the costs down South would be absolutely ridiculous.

I can't claim to be an expert on autism but I gather it ranges from people like Death and Nitrim (who honestly seem to function better than I do) to the Rainman stereotype. I can't see how treatment would in anyway be cheap considering what the mental health profession charges.

Personally I don't see why a dual approach can't work. Medication and therapy toghether, it certainly wouldn't be the first condition to be treated that way.

[Broomstick]

If medication was carefully introduced and carefully monitored for risk/benefit analysis... I'd be inclined to agree. However, I don't think that is what happens. I think all too often the kids are medicated to make them "manageable" - i.e. more passive and convenient for the adults around them. I would love to be wrong on that, of course, I really would, but so far I don't see evidence than I am.

I don't think the objection is to medication for the benefit of the child. I think it's an objection to medication for the benefit of others and fuck what the child's needs really are.

[Broomstick]

What a whiny bitch. I hate people who're completely dependent on the luxury and pity - yes PITY - of modern advanced society in order to survive and persist, and in the same voice the ingrate pronounces their superiority and transcendence over it.

Yes, indeed. I've been ruminating on this for a couple days.

Humans are SOCIAL ANIMALS, and your condition is MALADAPTIVE to functioning successfully in a human community, and requires dedicated investment of time and resources to even partially habilitate (and is still often unsuccessful). You do not perform an unalienable unique role in the advancement of human civilization, very few of you relative to healthy people, transcend your condition and contribute strongly.

There are high functioning AS folks who, in past generations, would have been regarded as odd, but not as having a neurological disorder. There are more severely affected AS folks who would have been seen as very odd and probably would have lived very uncomfortable lives.

Today, we have high functioning autistic people such as the aforementioned Temple Grandin. She is not a person with Asperger's, she is a true autistic. I've read some of her books and she is quite clear in her memories of when she was a screaming, non-verbal, poo-flinging horror of a child. She is currently a professor at the University of Colorado, a holder of a PhD, and a successful designer of animal-control systems used in stockyards and slaughterhouses. She also is quite eloquent in speaking about how freakish her behavior was, and how she still struggles with normal day-to-day social interactions despite being well off financially and able to care for herself. A century ago it is unlikely she would have been anything other than locked in an insane asylum. Earlier still, she would have been the village idiot if she was lucky. As it is, she was damn lucky because most of her generation of autistics were warehoused and forgotten. Dr. Grandin's good fortune (other than a family that did not give up on her, despite some other weirdos in the tree) is that she finally "got" what verbal communication was about and thus is that rare entity, a highly verbal autistic.

People like FOG3 sit in their privileged little caves with no clue how fortunate they are, or how much they are at the mercy of technology and society. Outside of the West, it is unlikely anyone would bother to deal with him and his issues. "Defectives" - whether mentally ill, AS, autistic, retarded, or what have you - are still routinely locked up, chained to walls, and otherwise kept out of sight in much of the world even today.

I really do think we need better treatment for AS and autism, and not just because we might be missing an Einstein or Dr. Grandin. It's because they're human beings and should be, as much as possible, be given the tools to live as fulfilling and independent lives as possible.

But some of the folks need to come to grips with the fact they aren't normal. That doesn't make them bad, or less deserving. It should not be seen as a judgment of their worth. It should be seen as a fact.

Now, some folks are so mildly affected by these disorders they can manage even without extensive therapy and services. Bully for them. And really, in those cases, we probably should leave well enough alone and not poke around too much at this point. Certainly, if such people express discomfort or a desire for assistance they should be able to have it, but all too many in the AS/autistic movement seem to have forgotten the dictum "First, do no harm".

Meanwhile, we have non-verbal, screaming, poo-flingers to worry about. I can't imagine that such people are "happy being a cat" What kind of life is it when your sole means of communication with the rest of the human race is to point and scream? We're talking about kids with less ability to communicate than our pets. Now, I don't think hammering these kids with a one-size-fits-all "treatment plan" would necessarily work, either. We don't know, at this point, what's really wrong structurally in these kids' brains. It may be the part of the brain that controls verbal speech isn't working right, and maybe that's why some of these kids do better with sign language or computerized communication aids. Others may have problems with interpreting sound, but could be taught to speak with proper therapy. There may, in fact, be something wrong with their sensory input systems in which case altering their environment may help a great deal. We owe it to these kids, as fellow human beings, to at least try to reach them.

You know, I've been thinking about some cases I've heard about with non-verbal autistics and situations like the recent power-outages we had in my area. If you're non-verbal it becomes VERY difficult to call for help in an emergency. If you're dependent on technological aids to communicate and the power goes out you're back to non-verbal. While such aids can allow many AS/autistic people to function in the normal world, to hold down jobs, to speak for themselves, to communicate, when technology breaks down they are at an enormous disadvantage. That's not fair, but it is reality. We really do need to try to enable these people to have at least enough communication ability to say "I'm hurt" or "I need help" somehow, as a minimum. Even better if we can do more.

Of course, such detailed, analytical, one-on-one approaches, or multi-therapist-for-one-child approaches, are enormously time consuming and expensive. That's a problem, because at lest in the US (and I suspect a lot of the rest of the world) people want an instant, easy fix. Even for AS/autistic children who are functional but still odd, I think many parents want to force that child that extra few steps into "completely normal" rather than trying to maximize what the child actually has. For some folks, being able to live in a small apartment, work just enough to pay the bills, and have time for an obsessive interest would be a pretty good outcome. Would be nice if they could have better, but really, if the person in question is content that's a decent outcome.

But this bullshit of "we're different so we're superior" is just that, bullshit.

Here's how I relate it to my own experience: I'm colorblind. I literally do not experience the visual world as the majority of the human race does. Granted, it's not a HUGE difference, but it's there. Most of the time it doesn't negatively impact me. On one occasion it did make me "superior" - a local restaurant chain was having a promotion were you got a card with a pattern printed on it, then put it under a special light that enabled you to see the prize printed there. They did this by overlaying one color of printing over another, so to a normal person it was a smear of color. Purely by chance, however, they chose colors that, to someone with my color vision defect, allowed me to see the printing clearly in normal light. Uh, yeah, I rummaged through the cards to find the prize I wanted - cute parlor trick. Very nice. When management discovered my trick they ended the promotion for me and started handing them out instead of letting people choose. Oh, yeah, big superior talent. Anyhow... meanwhile, because my color vision is not normal there are circumstances (such as use of colored warning lights) where it could be not just an inconvenience but a safety issue. There are certain jobs I will never be able to do because I don't see normally. I'm not always happy about that, but I accept it as a fact and arrange my life so it's a minimal issue. If you offered me a magic pill at this point to cure me... you know, I kind of doubt I'd take it. I've gotten used to my off-color world, it's minimal annoyance, and I wouldn't bother. Maybe, if I was younger and had a burning desire for one of those off-limits jobs I would do it.

Now, granted, that's very different from AS/autism, but I use it to relate to a high-functioning AS/autistic who has adapted to life as it is, is satisfied with life as it is, and doesn't see a need to "fix" problems that bother other people more than him or her. Such a person's life may not be entirely normal, but it's not bad, either.

Now, a lower-functioning AS/autistic person would be more analogous to someone with monochromatic vision who sees no color at all, just shades of light and dark. That condition does exist, and it is definitely disabling. Such a person can't see well enough to drive a car, normal daylight can cause temporary blindness, they frequently have trouble learning to read and write, they don't receive information that's color coded... fortunately, with adaptive aids ranging from something as basic as sunglasses to as high tech as computers these people can be helped to lead good lives, but there is no getting around the fact they have a problem. The fact that one such person has devised knitting patterns that are intelligible to others with her condition but senseless mushes of color to people with normal sight - a neat parlor trick - doesn't make their vision "superior".

Then there's the whole steaming pile of bullshit about Deaf culture and deaf people who maintain they aren't handicapped. Yes, they are. They may be fortunate enough to live in a society where their deafness is more an annoyance than a threat to life and limb, but they still have a handicap. The world is built for normal people, not deaf people, not vision-impaired people, not those in wheelchairs, and not folks with wonky brain workings.

Bravo if an AS/autistic person has an unusual talent or skill, or is exceedingly skilled in a normal area of endeavor, but it doesn't make them superior. It might enable them to make a good living, but in many other areas they will still be at a disadvantage. And that's what pisses me off about people like FOG3 - the "oh, I'm special and therefor superior" attitude. A dog that can act like a cat is an interesting parlor trick, but if he can't act like a dog when he's off stage there is something wrong, even if he's happy thinking he's a cat. The situation may not require drastic action, he may be able to live a healthy and happy life thinking he's a cat, but he isn't a cat. He's a weird dog. Sure, we shouldn't devalue someone who is different, but we shouldn't pretend all is right with someone who is deaf, who is colorblind, or who has AS or autism. Some of these problems are more serious than others, but all are deviations from the norm.

[The Dark]

I always got the impression that medication is simply cheaper and easier than the team of therapists required to re-train an autism sufferes brain. To use myself (with PTSD and physical disabilities) as an example, it's taken eight years to progress to being able to function reasonably well outside the house and to be able to do things like lift my daughter once a week for a few minutes. The mental therapy alone for eight years at 160$ an hour is around $35K plus the cost of physio and surgeries. That's in Canada so I imagine that the costs down South would be absolutely ridiculous.

If the medication is effective, then it probably would be less expensive than full therapy. Unfortunately, there's essentially no true studies on autism medication, and both chelation and Vit A therapy have led to deaths of autistic children. Likewise, there's some evidence to suggest that chelation reduces the level of heavy metals in the blood by depositing the metals in the central nervous system. The only researched treatments are Applied Behavioral Analysis (a behavioral therapy) and Risperdal (an anti-psychotic medication with some rather nasty side effects - almost 10% of people medicated with Risperdal have to be taken off the medication due to the side effects). The real difficulty is because autism is a spectrum disorder, and often associated with other disorders as well, so organizing a double-blind research study is difficult because finding identical or near-identical patients is improbable.

[Broomstick]

If the medication is effective, then it probably would be less expensive than full therapy. Unfortunately, there's essentially no true studies on autism medication, and both chelation and Vit A therapy have led to deaths of autistic children.

And I can't for the life of me understand why either chelation or vitamin A were ever used to treat autism. Heavy metal poisoning only superficially, at best, resembles autism, there is no evidence heavy metal causes autism, and children with clear heavy metal poisoning that does respond to chelation therapy are also clearly not autistic even if they have neurological problems as a result of that poisoning.

Likewise, why vitamin A? Where is the evidence that lack of this causes autism? And it's been know for a LONG time - over a century - that too much vitamin A causes damage or even death.

Using either on autistics isn't treatment, it's malpractice.

[SirNitram]

Since this thread was all about coming clean on being wrong, I will again admit I made a statement which, upon additional research, is wrong. ABA/IBI, one of the many cures offered, has been experimentally tested. The test was far from ideal, but I will begin with a brief blurb from an ABA advocate.

"ABA is expensive and grueling, but is considered the "gold standard" of autism treatment by experts. Its success is based on a variety of factors, including the age of the child and access to a qualified therapist.

...

"Most of us in the field would say that occurs in 5 to 10 percent of children, and that is a generous estimate," McCarton said. "There are many children who have the diagnosis who get extensive number of hours of ABA therapy and they won't recover. They absolutely won't recover."

The Gold Standard of treatment, the glorious method that's so great people demanded government funding(Auton case), has a 5-10% estimate, if the very people promoting it are generous.

Now the study, the abstract, and some comments from me on it.

Journal Of Child Psychology And Psychiatry link to the full.

Background: This prospective study compared outcome for pre-school children with autism spectrum disorders (ASD) receiving autism-specific nursery provision or home-based Early Intensive Behavioural Interventions (EIBI) in a community setting.

Methods: Forty-four 23- to 53-month-old children with ASD participated (28 in EIBI home-based programmes; 16 in autism-specific nurseries). Cognitive, language, play, adaptive behaviour skills and severity of autism were assessed at intake and 2 years later.

Results: Both groups showed improvements in age equivalent scores but standard scores changed little over time. At follow-up, there were no significant group differences in cognitive ability, language, play or severity of autism. The only difference approaching significance (p = .06), in favour of the EIBI group, was for Vineland Daily Living Skills standard scores. However, there were large individual differences in progress, with intake IQ and language level best predicting overall progress.

Conclusions: Home-based EIBI, as implemented in the community, and autism-specific nursery provision produced comparable outcomes after two years of intervention.

Problems I have with the two groups.

Average intake IQ: 83 for the ABA group; 65 for the nursery group.

Percentage of females: 33% ABA, 4% nursery.

Intensity of intervention: ~33 hrs/wk ABA, ~26 hrs/wk Nursery.

With higher base IQs, more hours per week of treatment, and less females(Girls supposedly are hit harder), ABA failed to produce anything but comparable results in the outcomes. It was tilted in their favor, and they couldn't pull it off.

[Broomstick]

For those who, like me, may be reading this thread and are not familiar with autism therapies, I'd like to reference this article from wikipedia that provides an overview of therapies ranging from "has some demonstrated benefit" to "lunatic fringe", which will provide some knowledge of what acronyms like "ABA" stand for.

I find the list quite startling, and my conclusion is that there are so many treatments of possibly (or certainly) dubious quality because nobody really has a good answer on how to alleviate symptoms, much less provide anything close to a cure.

[SirNitram]

The person who developed it used such simple techniques as smacking the child in the face until they did the right action, electroshock, and binding them down for hours on end. The 1960s ABA however, became starkly less effective when such treatment options were outlawed for, you know, the fact it's abusive as crap.

[Big Orange]

I've got high functioning autism has well and it seems problematic enough that it makes seem to make me grow up slower than the norm.

[Norseman]

For the motherload of all anti-autist / Anti-Vaccine material go to Hating Autism and just start reading! You can't really go far wrong.